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Charlie Gard


OverSword
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5 hours ago, Claire. said:

It's an interesting look at parental rights, isn't it. Here in the US our courts have intervened in situations where parents want to deny their child, for whatever reason, life saving treatment (such as blood transfusions or chemotherapy). But when it comes to stopping parents from doing everything they can to save the life of their child, we find the idea extremely repugnant.

Ultimately, everyone wants what's in the best interests of the child. The rationale behind the court's intervention in this instance, was not one of financial considerations, but out of concern that the parents had lost their objectivity in their desperate attempts to save their child's life and were making decisions that were not in his best interests.

 

I think it isn't the courts place to say such a thing. I find it literal madness that this ended up in a court to begin with. This was the difference between life and death, at least that was the potential. No oe should be able to force you in a situation where they believe death is in your best interest. This is medical tyranny.  

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I'll be brutally blunt.  From everything I have read, the kid was already dead. The only thing giving the illusion of life was the machines keeping the body alive.  It took the American doctor coming over and saying that it was no good for the parents to finally accept it.  

 

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Posted (IP: Staff) ·

Charlie's parents want to take him home to say their goodbyes, but it's not looking likely that they'll even be allowed that.

Quote

Moving Charlie Gard to a hospice to die would be the best option for the terminally-ill baby, a court has heard.

The 11-month-old's parents had returned to the High Court to seek permission to take him home for "a few days of tranquillity outside the hospital".

But Great Ormond Street Hospital (GOSH) said there were practical problems with that proposal, for example his ventilation equipment would not be able to fit through their front door.

The judge will rule on Wednesday.

http://www.bbc.co.uk/news/uk-england-london-40716292

 

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2 hours ago, Still Waters said:

Charlie's parents want to take him home to say their goodbyes, but it's not looking likely that they'll even be allowed that.

 

Unfreaking believable. 

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3 hours ago, Gromdor said:

I'll be brutally blunt.  From everything I have read, the kid was already dead. The only thing giving the illusion of life was the machines keeping the body alive.  It took the American doctor coming over and saying that it was no good for the parents to finally accept it.  

 

Because that's what parents do. They fight for their children. What ever the costs, what ever the odds.  What right does anyone have to stand in the way of that? These people weren't asking anything from these doctors or courts but to get the **** out of the way. 

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4 hours ago, preacherman76 said:

I think it isn't the courts place to say such a thing. I find it literal madness that this ended up in a court to begin with. This was the difference between life and death, at least that was the potential. No oe should be able to force you in a situation where they believe death is in your best interest. This is medical tyranny.  

I totally understand your point of view, and share it to a degree.

But if parental rights are to be sovereign, should they not be sovereign in all instances? After all, we expect all parents to act in the best interests of the child, don't we? But what if the parents are wrong? What then?

This is not a situation of the big bad legal and medical professions stomping all over parental rights. They, just as Charlie's parents, are acting in what they believe to be his best interests. The courts did not hand Charlie a death sentence — genetics did. His disease is incurable. Yes, incurable.  The disease has ravaged his organs. He is unable to see, hear, swallow, move or breathe on his own. His brain is severely damaged, and he also suffers from severe epilepsy.

His parents were under the delusion that he would someday, thanks to some experimental treatment, become a normal, healthy little boy. There is little evidence, if any, that nucleoside therapy would have benefited Charlie in any way as his genetic variant is different and significantly more devastating than the ones in which the therapy showed some improvement. It’s extremely unlikely that the treatment could have reached Charlie’s brain cells, let alone reverse the existing damage.

So it comes down to this: Since Charlie is unable to speak for himself, who should speak for him? Those who are wrong, or those who are right? Because in this case, it's his parents who are wrong.

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36 minutes ago, Claire. said:

I totally understand your point of view, and share it to a degree.

But if parental rights are to be sovereign, should they not be sovereign in all instances? After all, we expect all parents to act in the best interests of the child, don't we? But what if the parents are wrong? What then?

This is not a situation of the big bad legal and medical professions stomping all over parental rights. They, just as Charlie's parents, are acting in what they believe to be his best interests. The courts did not hand Charlie a death sentence — genetics did. His disease is incurable. Yes, incurable.  The disease has ravaged his organs. He is unable to see, hear, swallow, move or breathe on his own. His brain is severely damaged, and he also suffers from severe epilepsy.

His parents were under the delusion that he would someday, thanks to some experimental treatment, become a normal, healthy little boy. There is little evidence, if any, that nucleoside therapy would have benefited Charlie in any way as his genetic variant is different and significantly more devastating than the ones in which the therapy showed some improvement. It’s extremely unlikely that the treatment could have reached Charlie’s brain cells, let alone reverse the existing damage.

So it comes down to this: Since Charlie is unable to speak for himself, who should speak for him? Those who are wrong, or those who are right? Because in this case, it's his parents who are wrong.

If the only acceptable outcome was complete normalness then yea. We have no idea to what level the child may have recovered. They were just asking for a shot, and they were granted one. By doctors no less. Even if there was only a 1% shot the kid would have had some form of a life, who are these people to take it from him, or the people who were willing to take care of him? They literally didn't have to do anything but get out of the way. And now its to late. They are making sure these people understand who rules over them with a final slap to the face not even letting the child go home.

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Being a doctor isn't like being a mechanic. Doctors take an oath to do no harm. If they know a procedure won't help, and could cause suffering, they can't be forced to do it just because people have money. 

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46 minutes ago, preacherman76 said:

If the only acceptable outcome was complete normalness then yea. We have no idea to what level the child may have recovered. They were just asking for a shot, and they were granted one. By doctors no less. Even if there was only a 1% shot the kid would have had some form of a life, who are these people to take it from him, or the people who were willing to take care of him? They literally didn't have to do anything but get out of the way. And now its to late. They are making sure these people understand who rules over them with a final slap to the face not even letting the child go home.

If Charlie had a shot at some form of a life? What form would that life take? If the doctors truly believed that the experimental treatment had potential in his case to effect some improvement, they would not have hesitated. Charlie's situation is extreme, his brain damage irreversible. He will never have a shot at a life with a speck of quality in it.

I have spent a great deal of time in critical care and have seen first hand families desperately trying to hold on to their loved ones for as long as possible, despite the fact that they know their family member is suffering. In some situations the patient's condition was so severe, their suffering so extreme, that nurses would leave the room in tears. And yet the families still held on hoping for a miracle that would never come. But there comes a point where enough is enough.

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As far as  can understand,this child was admitted to GOSH for a routine check-up, he became ill and the doctors are trying to cover up? There are better qualified doctors in the US willing to treat him but the UK doctors are trying to cover up? Is this it?

Edited by eugeneonegin
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5 hours ago, Claire. said:

If Charlie had a shot at some form of a life? What form would that life take? If the doctors truly believed that the experimental treatment had potential in his case to effect some improvement, they would not have hesitated. Charlie's situation is extreme, his brain damage irreversible. He will never have a shot at a life with a speck of quality in it.

I have spent a great deal of time in critical care and have seen first hand families desperately trying to hold on to their loved ones for as long as possible, despite the fact that they know their family member is suffering. In some situations the patient's condition was so severe, their suffering so extreme, that nurses would leave the room in tears. And yet the families still held on hoping for a miracle that would never come. But there comes a point where enough is enough.

Gotta tell a little story here. When I was around 19 years old, my first year of even beginning to understand what being a Christian was, I was working in this grocery store. It was my first week, so I was bagging groceries and bringing in carts from the parking lot. 

Well every week this large group of people would show up on this bus. People with severe mental and health problems. 

Long story short I'm bagging groceries for the group, I take a good look at one of these kids, and my heart literally breaks. This kid didn't even know what planet he was on. In my head I thank God that I wasn't born this way, and that I was healthy both mentally and physically. I will never forget this moment as long as I live. It's the only time I believe I actually heard God respond to me. I heard a voice in my head that plainly said "better is it for him to be as he is, then for you to be as you are". When I heard this I instantly knew it was true, on a deep spiritual level. Overwhelmed by the realization I had to stop what I was doing. I ran to the bathroom and cried. 

Point is it isn't for any court to decide what level of life is acceptable. There were medical professionals who believed he had a shot. People who work in the top of their field. It may have been a long shot, but it was a shot none the less. It was wrong on every level to deny them of it. 

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6 hours ago, eugeneonegin said:

As far as  can understand,this child was admitted to GOSH for a routine check-up, he became ill and the doctors are trying to cover up? There are better qualified doctors in the US willing to treat him but the UK doctors are trying to cover up? Is this it?

My understanding is that he started to show signs of being ill at around 2 months old and taken to hospital for tests which revealed his condition.  I do not accept there is any attempt to cover anything up.  (ETA this bit in parentheses: How can anyone infect a baby with a genetic condition?  Why would anyone want to?  Deliberately?  Accidentally?  Tell me how.  Come on, let's be sensible here.)

As to the matter of taking him home to die, taking him off the ventilator will cause almost instant death as his lungs work only because of the equipment.  That equipment is too large to physically get through the door of the parents home.  A hospice with private and comfortable accommodation is being rejected by the parents.

I do have to query why he couldn't be hooked up to a portable ventilator for the day or three between hospital and death at home.  There couldn't be any need at that stage to monitor all the other functions needing huge bits of equipment.  BUT I wonder whether here is a worry that once home and still on a ventilator this couple would refuse to switch it off.

As an aside, I read an account this last couple of weeks written by a mother who fought the authorities and medical profession to keep her severely disabled son alive.  She succeeded.  A completely different set of medical problems to Charlie meant her baby was eventually able to breath unaided, the opportunity to be able to switch off his ventilator passed, and now he is a young adult, in a vegetative state, bed bound and unaware of his surroundings.  The mother's conclusion?  That she has made the wrong call, has sentenced her son to a pointless existence.  That she hadn't fought for the benefit of her child, but she did it for herself.  I wish I could provide a source for this last but I can't remember which paper I read it in or exactly when.

 

Edited by Susanc241
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parents should be allowed to take him home or go abroad for treatment.

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42 minutes ago, ali smack said:

parents should be allowed to take him home or go abroad for treatment.

Well, yes of course they could, he could fly Ryanair, if it were not for the fact he is hooked up to medical devices that fill a room, without which he would be physically dead as well as brain dead.

My understanding is he was born with a genetic disorder which led to lack of brain and skull development.

The only doctor who felt he could benefit from treatment is a doctor with a financial interest in the proposed treatment, who had not examined him or read his medical notes!

The people who are suffering most are his parents (not Charlie, he is oblivious), the people who are benefiting are the lawyers.

 

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1 hour ago, Susanc241 said:

...pointless existence.  That she hadn't fought for the benefit of her child, but she did it for herself.  I wish I could provide a source for this last but I can't remember which paper I read it in or exactly when.

 

This is so spot on.

In our emotional response, people don't consider the facts.

But the so-called "Death Panel" (on this thread), which is,in reality, a panel of medical experts, feel they have done all that can be done. All the rest is hype and sensationalism.

And wasting money. Are his parents and their families proposing to pay £1000 pounds per day to keep him on life-support for the rest of his "life"? No, I didn't think so.

Of course no one is "sentencing a baby to die"!http://www.dailymail.co.uk/news/article-4730974/US-doctor-offered-help-Charlie-Gard-speaks-out.html

 

Edited by eugeneonegin
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4 hours ago, preacherman76 said:

Point is it isn't for any court to decide what level of life is acceptable. There were medical professionals who believed he had a shot. People who work in the top of their field. It may have been a long shot, but it was a shot none the less. It was wrong on every level to deny them of it. 

It's not a matter of the courts deciding what level of life is acceptable. It's a matter of them deciding how much a dying child should be subjected to.

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1 hour ago, eugeneonegin said:

And wasting money. Are his parents and their families proposing to pay £1000 pounds per day to keep him on life-support for the rest of his "life"? No, I didn't think so.

The first, and only, consideration should be the child's welfare. Money should never become an issue.

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2 minutes ago, Claire. said:

The first, and only, consideration should be the child's welfare. Money should never become an issue.

God I wish. I have been involved in many cases where while not coming out and declaring it insurance companies have basically dragged their feet in the hopes of a patient dying rather than having  to foot the cost of an air ambulance transport and the subsequent bills from an appropriate medical facility. 

 

 

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11 minutes ago, Claire. said:

The first, and only, consideration should be the child's welfare. Money should never become an issue.

Agreed. So who pays?

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27 minutes ago, Claire. said:

That would depend on the health care system.

And you would expect them to pay for ever, for an objective they felt was futile?

And even the doctor "approving" the treatment (without knowing the case) knew it  was futile?:http://www.dailymail.co.uk/news/article-4730974/US-doctor-offered-help-Charlie-Gard-speaks-out.html

Edited by eugeneonegin
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1 hour ago, eugeneonegin said:

And you would expect them to pay for ever, for an objective they felt was futile?

And even the doctor "approving" the treatment (without knowing the case) knew it  was futile?:http://www.dailymail.co.uk/news/article-4730974/US-doctor-offered-help-Charlie-Gard-speaks-out.html

Right now we've got Jahi still on life support being paid by Medicaid, indefinitely. And she is brain dead. 

That's what people don't get. You can have a religious belief that your child is not dead, but you can't force a nurse to put a feeding tube in your dead child. It's not ethical. 

 

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35 minutes ago, ChaosRose said:

Right now we've got Jahi still on life support being paid by Medicaid, indefinitely. And she is brain dead. 

That's what people don't get. You can have a religious belief that your child is not dead, but you can't force a nurse to put a feeding tube in your dead child. It's not ethical. 

 

I don't understand this.

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5 minutes ago, eugeneonegin said:

I don't understand this.

I'm talking about the Jahi McMath case. The girl was declared brain dead, and the parents insist she's alive. They've moved her to a facility in New Jersey and then to her home. Medicaid is paying indefinitely to keep her hooked up.

I'm just illustrating how in fact, there are people who "expect them to pay for ever, for an objective they felt was futile."

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjDp9GklqfVAhWM5yYKHWORCDYQFggmMAA&url=http%3A%2F%2Fwww.docbastard.net%2F2017%2F04%2Fjahi-mcmath-update.html&usg=AFQjCNE8SHTsaFphnFAN4Xj9PmHFSxKEpQ

Edited by ChaosRose
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5 hours ago, Claire. said:

It's not a matter of the courts deciding what level of life is acceptable. It's a matter of them deciding how much a dying child should be subjected to.

So a judge knows better then  top of their field Doctors given the task of creating new experimental drugs for this exact disease? You don't see a flaw in that line of thinking?

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  • The title was changed to Charlie Gard

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